Awareness is the best medicine
I remember many things from my battle with colorectal cancer, but one thing that stands out is people looking at me with pity, asking how I recognized the signs. The day before my diagnosis, I would have looked at someone the same way and asked the same questions.
How did I know? I didn’t exactly. I felt the changes in my body, spoke with my doctor, and found both comfort in him telling me everything was normal, and discomfort having an instinct that it was not. I knew my body, he didn’t. While he shouldn’t have dismissed me, I shouldn’t have dismissed myself. I should have listened to my inner voice earlier and asked more, learned more. It was MY life.
The year was 1999. My daughters were one and four years old. I was exhausted, but who wouldn’t be, working full time with two children under five? Along with my exhaustion, I was constipated – but that wasn’t rare for me. As time went on, my clothes began getting tighter and tighter at the waist – I was constantly bloated. I remember, very well, one late summer night I went for ice cream. I couldn’t finish my one scoop. I knew then that something was wrong – I could always finish at least two! It was time to see my doctor.
What followed was the same with each visit over the next 8 months or so. “Doctor, something is wrong with me, I’m bloated and constipated for weeks at a time”. His solution was to take laxatives. So, I did. I took so many that when they worked, my movements were as thin as a pencil. After some time, I started to bleed and again, he expressed no concern. It was time for me to get a second opinion.
I went to my GP who validated that what I experienced was abnormal, and promptly sent me for a barium enema. Immediately after the test, the radiologist at the clinic asked me how long I’d felt constipated. I wondered how he knew I wasn’t going to the bathroom. I later learned it was because he saw a peach sized tumour pressing against my large intestine, closing it from the average 7cm diameter to less than 1cm. Another month or so and I would have closed up entirely and likely died from septic shock.
I barely got home when I got the call from my doctor. What followed was a series of physical exams, lots of poking, ultrasounds, and bloodwork. My surgery was scheduled for the following week by a general surgeon. Having a brother in law who was a radiologist, I learned that if my tumour was cancerous, I should seek a cancer surgeon. A cancer surgeon? There was such a thing? I had to learn about an entirely new world so quickly.
And so I did. Having an oncology surgeon, combined with being so fortunate as to be in a clinical trial, resulted in my still being here over 20 years later. I also didn’t need a colostomy bag as the general surgeon had initially said I would need, all my life. Having said this, the road was not easy. It consisted of pre surgery chemo administered by a pump and PICC line, along with five weeks of radiation, an intestinal resection & complete hysterectomy (the radiation would have put me at risk for ovarian and cervical cancer), and four, post-surgery months of chemo (during which I bought pizza for the nurses each round, as an incentive to get me to the next round).
I was informed that my daughters should start undergoing screening for colorectal cancer when they turn 21 years old, or 10 years before the time of my diagnosis. When they tried to book these appointments, they received push back from our health system – you are far too young, these tests aren’t justified – even knowing my diagnosis. They had to advocate for themselves, and they did.
What did I learn during this and since this experience? Life can change literally overnight, or over the course of an hour. We know our own bodies, we are not an average, not a number, or a statistic. If something feels off, that’s because it is. Knowledge and self-advocacy for personalized treatment are everything. Often we don’t know what we don’t know, so it’s vital to use the resources available to us, to seek out information and to share experience and knowledge acquired. This is probably the one most important thing that has come out of this – sharing what I now know with others.
To summarize, awareness, knowledge, positivity (it’s ok to think positively in a terrible situation), taking one day at a time, and support combined with medicine are why I’m here today.
The most important thing, I believe, in avoiding or managing colorectal cancer is pre-screening AND knowing your body – when it talks, listen.